Which is safe food?

[Greteltje]

I'm new here. I would appreciate some information for my friend who can't eat anything without often having (severe) diarrhea, bloating, pain in the Douglas pouch, gastroparesis. She can' t even have broth without reacting badly. She has Sjögren's, Raynaud's, Lupus, mold issues, neuropathy, vertigo, diverticulitis, ... She's taking tons of supplements and the best case scenario is when she can eat 100 grams rice and chicken now and then. She takes Ketotifen and Nalcrom.

Her intolerance problem is severe and unpredictable. She's run all sorts of tests but according to her (Professor) Doctor Dermatologist/Allergologist there is no top expert in Belgium. He has referred her to Dr. Reinhart Jarisch in Vienna but due to COVID and her bad health condition she hasn't been able to go yet.

Thank you!

[Jess-UKMasto Administrator]

Hi Gretel, your friend's situation sounds very, very difficult. I'm so sorry. Unfortunately on diet it really does vary from person to person and what works for one may not work for another. People experiment with low histamine diets and something called a FODMAP diet, but your friend sounds like she is well beyond that. One feature of the low histamine diet that I would point out in case it is helpful is that leftover food is more likely to be high in histamine than very freshly cooked food. I can be fine with broth that is fresh on the day or frozen right after it is cooked, but react to it after it has been in the refrigerator for several days. I would be worried about further restrictions on an already very restricted diet-- something that was mentioned by Professor Qasim Aziz in the Q and A when he spoke at our conference in January. I'm glad your friend has an appointment for the future. Is she improved by the ketotifen and Nalcrom?

[Greteltje in reply to Jess-UKMasto]

Hello Jess, thank you for your reply. Unfortunately indeed, she's beyond that. Especially Ketotifen has helped her so far but the problem is that reactions to food are so unpredictable. Even the 2 sorts of food (cornflakes and a tiny portion of rice) she's limited to are sometimes a No Go either.

[Jess-UKMasto Administrator in reply to Greteltje]

I'm sure she's already doing this, but keeping a close diary to see whether other factors in her life are likely to be involved might help. For example, is it worse on days when she does a particular activity? (Cleaning products are a common trigger, as is emotional stress, for example. Also sometimes temperature or pollen exposures.)

[Greteltje in reply to Jess-UKMasto]

Yes indeed, and probably a combination of all these. Due to her many health problems, it is not always easy to find the trigger.